Owen's Story

Images Captured By Jamie Allport Photography

Tiny Light Owen is a happy little guy who loves making his mommy and daddy smile. He enjoys holding toys, saying the few words he has learned, and holding up his good leg so his parents can “eat it”. He has surprised everyone with his strength and determination and continually proves doctors wrong by learning to do what they say he will never be capable of.

Owen was born in March of 2011 in severe respiratory distress. He spent the majority of his first year in the hospital and was finally diagnosed in March 2012 with CHARGE Syndrome, a rare genetic disorder. CHARGE Syndrome consists of a wide variety of birth defects that vary depending on the individual. “C” stands for coloboma of the eye (a hole in one of the eye structures), “H” for heart defects, “A” for atresia of the nasal choanae (a blockage in the back of the nasal passage, caused by abnormal bony or soft tissue), “R” for retardation of growth and/or development, “G” for genital and/or urinary abnormalities, and “E” for ear abnormalities and deafness. Owen has overlapping skull plates, lower set ears, choanal atresia, narrowed eardrums, an atrial septal heart defect, laryngomalacia (weak cartilage), a small trachea, larynx, and windpipe, as well as hydronephrosis of his kidney (water in the kidney), umbilical and inguinal hernias, and hip dysplasia.

With the exception of the odd surgery or feeding tube complication, Owen is doing well. Most children with CHARGE Syndrome don’t survive their first year, but Owen is two years old and continues to grow stronger. He has recently learned to sit on his own for up to 40 seconds! While the future is uncertain and more challenges are likely to arise, Owen’s parents remain hopeful. Problems can arise at any time and even the common cold can cause major complications. While there have been many moments that have been difficult and scary, they are thankful for every day they have with their son. As his mom says, “He is perfect in every way and I know I wouldn’t trade a second of this journey for any other.”

Story by Emily Harrison